P1719: A PATIENT ADVOCACY PERSPECTIVE ABOUT CHRONIC MYELOID LEUKEMIA INEQUITIES IN ACCESS TO THERAPIES AND PATIENT JOURNEY IN THE LATIN AMERICAN REGION.
Authors: J. L. Castro Aguilar, F. Tapia Mathus, F. Piotrowski, N. Brown, C. Marin
Journal: HemaSphere (2022)

Background: The dramatic health-access inequalities of the population, even greater for chronic patients, have a high impact limiting the social and economical development of people and countries. Chronic myeloid leukemia (CML) patient organizations representing countries of the CML Advocates Network Latin American region have come to the conclusion that they share critical issues in patient access to treatment and monitoring tools, which results in health inequities arising from the location where people are born, live and age. Aims: Although the study covers many areas, its underlying aim was to highlight health inequities between CML patients as well as explaining the patient journey in the different countries of the region. Methods: A team consisted of four patient advocates designed the questionnaire to collect data and interviews, communication and website platform. Information was also collected from both the official sites of each country, the World Health Organization (WHO), the Panamerican Health Organization (PAHO) and other non-governmental organizations (NGOs) in a way that clearly reflects the reality of the CML patients in the region, from January 2019 and lasted until January 2020, covering the following topics: Population; National Health Law – Constitution; Health Expenditure in relation to GPD; Patient out-of-pocket expenses; Per capita gross domestic product; CML treatments available; Rate of estimated CML cases. Through a questionnaire and online interviews with the leaders of the CML national patient advocacy organisations, data were provided by fifteen patient organisations based in thirteen countries. The team carried out ten interviews with leaders of Costa Rica, Uruguay, Paraguay, Panama, Guatemala, Mexico, Argentina, Chile, and Bolivia. An interactive map was developed and published, showing the data collected for the different countries, and interviews were additionally published on the website. Presented data as of January 2020. Results: Collected data about availability of the different CML therapies shows substantial differences between countries in the region: 14 countries reported Imatinib available. 8 countries reported Dasatinib available: Argentina, Colomboa, Chile, Dominican Republic, Mexico, Nicaragua, Peru, and Uruguay. All countries except Venezuela reported Nilotinib available thourgh donations. Only 5 countries reported Bosutinib available: Argentina, Colombia, Chile, Nicaragua and Venezuela. Ponatinib was reported as an available treatment for patients in 5 countries: Argentina, Colombia, Chile, Ecuador and Venezuela. The study identified disparities in patient journey of people living with CML in different countries. Reported data evidence 9 diverse process defining the entire sequence of events that a CML patient experiences within a national healthcare system, from the diagnosis to receiving treatment for the disease. The study also shows the variety of the patient advocacy groups in the region, listing twenty patient advocacy organisations from sixteen countries. Image:Summary/Conclusion: Availability of the different types of CML treatments in Latin America is quite uneven: from countries in which patients can access all existing therapies including clinical trials, to others in which access is limited to one treatment achieved only through donations. Inequities are not only present in the availability of the different therapies to treat CML, they are also evidenced in the differences existing in time to patient access to be effectively treated and monitored.